I am making this point because recently I met Emily. She is a 17 year old Austrian girl who is suffering from constant double vision. Of all strabismics I have spoken to, she is one I relate to most. She has a history of long standing strabismus and ended up with double vision almost entirely due to what I would call medical malpractice. Sadly these practices of jumping to surgery without any attempt to draw on the potential of neuroplasticity through visual training are still routine… What’s more, Emily has childhood medical records stating that she has had stereo vision at one point which she is now lacking! If only there would have been a vision therapist or behavioral optometrist around to make sure things didn’t go array!
Just a month ago she poignantly described her frustrations in dealing with ophthalmologists after a recent surgery.
"Just came back from my eye doctor appointment and don’t quite know how I should be feeling. I mean they were really pleased by the way my eyes looked and all but that doesn’t change anything about the fact that my vision is still messed up. I mean… Yeah, I get that it must be quite hard to understand how I feel because I must admit I’m no good at telling people how much my vision really holds me back from doing the things I’d like to do. But still…they know me and they do know how much I struggle! They just know it when they look at me. And then they still pretend everything is fine and that they are happy that I’m feeling so much better… And I’m thinking like: No, just noooo!!!
I don’t even know what I expected… Because somehow every time I go see my ophthalmologist I feel that way when I come back home. It’s just strange how I suddenly change the way I “look” at things. If you had asked me yesterday how I feel about my eyes then I’d probably said: Great, every things just fine! Maybe I would have said that double vision gives me trouble but no more than that.
And then here we are today. Emily all frustrated because she doesn’t know how to cope…OK I got told that I’ll have to live with the fact that I’ll never have “normal” vision. Thanks a lot, that was kinda obvious to me but never mind. So no help what so ever! I’m just really pissed off (sorry for my language) and annoyed because I feel so left alone! They did tell me that I can always ring them if I start having problems… Hey, that means I should be on the phone calling them all the time! Not sure if they particularly want that. So what do I do now!? Carry on just the way I did before. Seems like that’s my plan.
How strange is it that I’m starting to wonder if surgery was the right decision…Ok I had this stupid Fresnel lens on my glass and it made me look like an idiot BUT I didn’t have constant double vision with my glasses (I’m just ignoring the fact that it’s the best feeling being able to look at people without being ashamed of a turning eye…so don’t take the last couple of lines to serious, I’m just feeling sorry for myself hahaha.)
Ahhh but isn’t it a good sign that they are just leaving me for 6 moths…letting me going my own way! It is, right? Means that my eyes are not too messed up! Or it could mean they have no idea what they should do with me… Doesn’t really matter anyway because either way I’m in the same position and left with stupid double vision.”
This message hit me hard, even now, because it portrays exactly how I felt a few years back. In particular concerning the hypocrisy of people saying they care but exhibit a very limited attention spam when it comes to figuring out a long term solution and instead just urge you to ‘learn to live with it’. Well, I can’t live with it and I have always stated I can't live like this forever. Fortunately I did find out the truth. I don’t have to live with it and I will fix this even if it kills me. However, knowing the truth and knowing that you are right and they are wrong is a very cheap consolation prize considering the stakes involved...
And as if that message wasn’t familiar enough, she even did me one better.
"You know what really bugs me...is when people come up to me and keep telling me how great and fantastic my eyes don't look and I must be feeling sooooooo much better... I'm thinking 'oh good...so you know what I'm going through! Well then let's swap for 10 minutes... I bet you'd feel like jumping out of the window in just 2 seconds! For god's sake it's not about the turning eye. It's about the double vision.' ”
God, she was saying all the right words! It’s like listening to myself! Or maybe rather my past self… After two and a half years of Vision Therapy my double vision is facing extinction but I can’t wait to wrap this baby up in a few months and top it off with some stereo vision. Yes, it most certainly is possible and I won't be the first nor will I be the last one to do it either.